The 22nd ERN Coordinators Group Meeting organised by the Italian ministry of health and the European Commission held in Rome, Italy covered key discussions on funding, evaluation, structural changes to working groups and integration of ERNs into national healthcare systems. Orphacodes and the disease coverage of the ERNs were discussed, ensuring relevant expertise at the ERN level. Reports from working groups highlighted monitoring efforts, knowledge generation, and legal and ethical considerations. The Board of Member States meeting was also held and the representatives of BoMS took an active interest in the ERN reports and decision making. Future plans centered on advancing research activities and preparing for the Rare Disease Partnership, shaping the next steps for collaboration and improvement in rare disease healthcare.Â
